{"title":"联邦数据分析能否成为加速引入新生儿基因组筛查以检测遗传疾病的催化剂?","authors":"Petros Tsipouras, Maria Chatzou Dunford, Hadley Sheppard, Hannah Gaimster, Theoklis Zaoutis","doi":"10.20517/rdodj.2023.15","DOIUrl":null,"url":null,"abstract":"Data federation intermediated through trusted research environments can help accelerate the adoption and utilization of newborn genome screening worldwide. Data federation will protect individual datasets from unauthorized security breaches, allow analysis in situ , and bypass the need for cumbersome data sharing agreements between parties. Finally, data federation could accelerate the adoption of new therapies for rare genetic diseases with the use of synthetic clinical trials.","PeriodicalId":74638,"journal":{"name":"Rare disease and orphan drugs journal","volume":"82 1","pages":"0"},"PeriodicalIF":0.0000,"publicationDate":"2023-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Could federated data analysis be the catalyst accelerating the introduction of newborn genome screening for the detection of genetic disease?\",\"authors\":\"Petros Tsipouras, Maria Chatzou Dunford, Hadley Sheppard, Hannah Gaimster, Theoklis Zaoutis\",\"doi\":\"10.20517/rdodj.2023.15\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"Data federation intermediated through trusted research environments can help accelerate the adoption and utilization of newborn genome screening worldwide. Data federation will protect individual datasets from unauthorized security breaches, allow analysis in situ , and bypass the need for cumbersome data sharing agreements between parties. Finally, data federation could accelerate the adoption of new therapies for rare genetic diseases with the use of synthetic clinical trials.\",\"PeriodicalId\":74638,\"journal\":{\"name\":\"Rare disease and orphan drugs journal\",\"volume\":\"82 1\",\"pages\":\"0\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2023-09-27\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Rare disease and orphan drugs journal\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.20517/rdodj.2023.15\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Rare disease and orphan drugs journal","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.20517/rdodj.2023.15","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
Could federated data analysis be the catalyst accelerating the introduction of newborn genome screening for the detection of genetic disease?
Data federation intermediated through trusted research environments can help accelerate the adoption and utilization of newborn genome screening worldwide. Data federation will protect individual datasets from unauthorized security breaches, allow analysis in situ , and bypass the need for cumbersome data sharing agreements between parties. Finally, data federation could accelerate the adoption of new therapies for rare genetic diseases with the use of synthetic clinical trials.